Pretty Sure I Am Gluten Intolerant But Not Been Diagnosed.

[Kerian11]

Hello everyone.  I am new to the forum and fairly new to having a gluten free diet.

 

I have been wheat free and pretty much gluten free for almost 3 months now, except for the odd food I did not know had wheat in it.  It was recommended to me by my chiropractor (who is a naturopath), after weeks of abdominal cramping, nausea, fatigue, and joint and muscle pain, amongst other things.  Doctors have told me IBS, gastritis, gall bladder problems, etc. etc.  Now they are testing me for Crohn's disease and diverticulitis.  I have been through many many tests.  I was tested for Celiac last year and it was negative, but I was also told it was a very inaccurate test.  I don't want to take it again as I do not want to start eating wheat again.  I have noticed improvements since I cut out wheat.  There are times when I do not feel well still though and I am not sure why.  I was feeling good and almost symptom free for a couple of weeks and then this morning woke up feeling sick again.  It is really bad tonight after dinner.  I ate leftovers from last night and after reading the rice ingredients, I found out there was wheat in it!  I am 99% sure that that was the problem.  But I can not be diagnosed Celiac if I am because I am not eating it.  I am so afraid of eating it.  I feel so terrible right now.  Can a couple of small doses of wheat make me this sick after only 3 months of not eating it?  I just don't know what to do anymore.

[shadowicewolf]

If you have an issue with gluten, you also need to cut out barley and rye (as it was unclear whether or not you had or not)..

 

Yes, it can make you sick after three months.

[nvsmom]

Welcome to the board.

Unfortunately, those with gluten sensitivities will be affected (feel ill) every time they eat gluten regardless of whether it is celiac disease or non-celiac gluten sensitivity (NCGS). I agree with shafowicewolf.

If you can't do a gluten challenge to test again, then don't put yourself through that. You know that you are at the very least NCGS, and need to avoid gluten. You are right that it could be celiac disease, but that won't change the treatment. It sounds like you are doing pretty well on the gluten-free diet already. Keep doing what you are doing and I am guessing that you will continue to improve.

I think you might as well continue with the testing you are doing now, but let them know you have NCGs or celiac disease as well. Hopefully over the next months, the gluten-free diet will clear up more flour symptoms. Best wishes.